Map of life expectancy at birth from Global Education Project.

Monday, August 13, 2018

What's in a name?

From time to time I have commented on the controversies over cancer screening. Most people assume that screening is an unqualified good, that early detection of cancer saves lives. Whenever some panel proposes recommending less screening, we hear screaming and yelling from advocates who claim they are trying to "ration" health care to save money at the expense of people's lives.

In fact, as a bunch of Australians and a Minnesotan explain in BMJ, there are a few conditions called "cancer" that you are better off not treating, or perhaps treating very conservatively. These include what is called ductal carcinoma in situ (DCIS), which is very commonly found by mammography, whereupon women are told they have breast cancer. Another such condition is low risk localized prostate cancer. A huge problem has emerged as doctors have started screening for thyroid cancer and thousands of people are having their thyroids removed, but mortality from thyroid cancer has not decreased. It turns out that most people are found to have "thyroid cancer" on autopsy, which never caused them any trouble, just as most men are found to have "prostate cancer."

In the case of DCIS, it is possible to remove the lesion (called "lumpectomy") which doesn't cause much harm. However, many women opt for more radical treatment, sometimes including total mastectomy and often radiation and chemotherapy, with the attendant side effects. Men who have their prostates removed may end up with erectile dysfunction and incontinence. Thyroid removal can cause collateral damage, and results in the need for lifelong hormone replacement therapy.

It's difficult to persuade patients that they can just watch it and do nothing. They'll most likely be just fine, they'll avoid the pain, financial cost, and adverse effects of treatment. We'll keep an eye on it and if it looks like it's growing, then we can act. But if you've just told people they have cancer, they aren't going to hear that message. Cancer is deadly, cancer is scary. Of course, doctors make their money by doing surgery, chemotherapy and radiation so they aren't really hearing this message either in many cases.

But there's a solution. Don't call it cancer. Words can make reality. Tell people there are abnormal cells, or a lesion. This type of abnormal cell seldom causes any problem, but just in case we'll check on it every six months or so. There will be disputes about the ethically appropriate discussion to have. Many will argue that patients should be offered the option of treatment; some will perhaps feel more anxious with no treatment. But that's a function of our starting point. Since we call this cancer now and typically treat it, people will worry if we don't. As the linked essay says, it will take considerable effort and community engagement to process such a change in the culture of medicine and achieve general acceptance. But it will save a lot of suffering, not to mention money, if we make the effort.


Anonymous said...

This really hit home as my wife was diagnosed with DCIS a couple of years ago. She is an RN and teaches and certifies other nurses in wound treatments.

The oncologist recommended the standard lumpectomy with follow-up radiation. She chose a more radical treatment 1)because of her family history with breast cancer (and it ain't good) and 2) she's personally seen the side effects and future risks of radiation treatment.

I don't think the top-down, one size fits all approach answer to the problem is the best solution for everyone.

Mark P said...

Skin cancer, or at least some types, is one area where they avoid using the term "cancer." I get routine screenings and almost every time the doctor or his PA finds what they call actinic keratoses. Sometimes they will say that they are precancerous. In fact, if you do some reading, you find that they are actually cancerous, but at an early stage. They avoid using the word to avoid scaring people, apparently. In any case, the treatment is the same, a spritz of liquid nitrogen.

Cervantes said...

Sure anonymous, she can make that choice. Nothing in the blog post or the linked essay says anything about about a "top down, one size fits all approach."

Anonymous said...

"But there's a solution. Don't call it cancer. Words can make reality. Tell people there are abnormal cells, or a lesion."

NO If it's cancer, then tell them it's cancer. Let them make their own decisions based upon the facts. It's not the physician's job to lie to their patients.

He can explain what his opinion is and what he thinks is the best choice for treatment, but don't lie about it.

Recommending that the health community just lie to people as a solution is just not an ethical position.

Don Quixote said...

All nuance, subtlety, irony, and humor are lost on "Anonymous." It's just not in his wiring. As I stated in an earlier post comment, I and others I've spoken with are beginning to believe that political orientation and other seemingly inexplicable characteristics of people are probably physiologically-based. It's genetic. Otherwise, all people--grownups, I'm saying--would be susceptible to changing their perspectives based on the introduction of new information or viewpoints. So it's not "Dunning-Kruger" but, rather, the idea of an inherent inability to incorporate new information and change perspective, based on a genetic predisposition.

Cervantes said...

But it isn't cancer you numbskull. That's the whole point.

Anonymous said...

Ductal carcinoma in situ (DCIS) means the cells that line the milk ducts of the breast have become cancer , but they have not spread into surrounding breast tissue.
In most cases, a woman with DCIS can choose between breast-conserving surgery (BCS) and simple mastectomy. But sometimes a mastectomy might be a better option.